Team Cerebra at the Superhero Series!

Rob and Poppy with Anthony, Rhys and Kevin

On Saturday 19th August two very special Superheroes joined team Cerebra for the first ever Superhero Triathlon at Dorney Lake, Windsor.

The Superhero Tri is the UK’s one and only disability sports series for the everyday Superhero and their family and friends. It was also particularly exciting because it was the first ever Superhero Tri so our team didn’t know quite what to expect!

Returning to team Cerebra was triathlon veterans Rob and Poppy who have previously taken part in the Cardiff and Swansea Triathlons using equipment designed especially for Poppy by the Cerebra Innovation Centre.

Joining the team was Anthony, his son Rhys and family friend Kevin. Kevin has previously taken part in a number of “Tough Mudder” events but this was the first event of this kind that Anthony has participated in.

Anthony said: “Me and Kevin wanted to do something with Rhys not for him and that’s why we entered the Superhero Triathlon. We wanted to give Rhys an experience he has never had and will certainly remember.

Words cant describe how much gratitude we have for the support and generosity given to us by Cerebra. The team worked with us to give our son the biggest day of his life. Every step of the way Cerebra have shown nothing but enthusiasm and commitment to making it happen! An amazing charity with such amazing people. Massive thank you!”

They all did us proud and crossed the finish line with a mixture of excitement and relief!

So far, Rhys, Anthony and Kevin have raised over £1,000 for Cerebra which is incredible! The whole team has raised over £2,000 so thank you to everyone who has donated so far. You can donate to the group campaign here.

School Transport Report

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds have published a report about the accuracy and accessibility of school transport information on local authority websites in England.

The students looked at 71 websites and identified serious failings in the information provided to families.  Almost 40% of the websites failed to clearly explain the legal rights of children with special educational needs or disabilities to school transport. The report also highlights how some school transport policies are more restrictive than they should be (see the examples on page 12/13).

You can read the full report here.

If you have a school transport problem, our Parent Guide explains what you can do to solve it.

Your Average Jo

In the latest of our series of articles from young people talking about growing up with a disability, Jo tells us her experiences:

“I was asked to write an article for Cerebra about what it’s like for me as a young disabled person. This, as I’m sure many of you are aware is a massive topic, and not one that can be covered in one fell swoop. The experience of disability is different for everybody, regardless of whether they are disabled or not. And within every personal journey there is so many things to talk about, such as attitudes and relationships, services, obstacles, the list goes on.

So, on this basis, and considering I haven’t written an article for Cerebra before, I thought I’d simply introduce myself to you all and try to give you an insight as to what it’s like being me. Granted, I don’t think my life is all that interesting, but if you’re anything like me you love to hear other people’s stories…So here’s hoping this is up your street.

I guess the mantra for my life arose when I was little. I impulsively announced to my Physiotherapist that I was going to be a ballerina when I grew up. When I tell you that I have Quadriplegic Cerebral Palsy and I’m a fulltime wheelchair user, I’m sure you can picture the look on the Physios face as she attempted to come up with a response that would neither put me down nor get my hopes up. After a few seconds, she tactfully suggested that perhaps I could be a choreographer instead.

It’s safe to say I didn’t become a ballerina, or a choreographer for that matter. Not because I felt as though my CP prevented me, but because with or without a wheelchair I have two left feet and very little artistic flare. The point is, from an early age I was never told I categorically couldn’t do something. If I had grown to be passionate about ballet, then there would have been a way for me to have been involved. At the same time, no one in their right mind would’ve led me to believe I could’ve become the next Darcy Bussell. I’ve always known my potential as well as my limitations. I’ve embraced them and worked with them.

With this notion firmly rooted in my mind, when I reached school age the prospect of being the only kid who used wheels as opposed to legs didn’t faze me. Sure, my fellow five year olds stared at me as they were asked to push me round the playground and thus were effectively told to ‘be nice to the disabled girl’, but I knew that I had much more to offer than a chair that they could take turns to push. My mission, even at this young age was to make them see beyond the chair.

I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.

I’d love to tell you that I had a grand plan as to exactly how I was going to accomplish this, but I really didn’t. In fact, the icebreaker was entirely accidental and somewhat physically painful. A boy in the year below me unintentionally tipped the chair, and by association, me, into a patch of nettles. As I lay there laughing at my misfortune, I caught a glimpse of the poor boy’s face and realised that whilst I had found the situation hilarious, he had burst into uncontrollable tears at the thought that he had hurt another pupil. I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.

Are you bored of me rambling yet? Oh good…I’ll carry on then.

One of the things that perplexes me most, is the assumption that disabled people are an inspiration. A case in point for this baffling concept came from an English assignment I was given which had to be based upon my first year of secondary school. I can’t remember what I specifically wrote, but I have a recollection of the poem detailing the countless risk assessments that had to be done for my needs to be met, as well as stating that I was always late for lessons because the routes that didn’t involve stairs took longer. I gave my work in with the passing thought that it was honest and humorous and didn’t think any more about it.

However, when my teacher handed the poem back to me she said that it was beautiful and that it had made her cry. In my mind, I thought her reaction was an over exaggeration as I had only done what she had instructed me to do. I remember thinking that perhaps this was simply within her character as she seemed to be the type of emotional person who would get through a box of tissues whilst watching The Notebook.

I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo).

At the point when I received two awards in one day for this ‘inspirational’ poem, things got weird. I was informed by the Headteacher that I offered an outstanding contribution to the community. To this day I don’t understand what the hype was about. I’m not saying I wasn’t grateful for the recognition and I wholeheartedly believe that many people disabled or able are inspirations. This said, it’s not like I had just climbed to the summit of Mount Kilimanjaro. If I had, I could understand what all the fuss was about, considering I can barely walk two steps before the air seamlessly runs out of oxygen. Instead, I was given praise for just being me, which I find totally bizarre. Shouldn’t everyone be acknowledged for being themselves?

So, there you go folks. Just a small snippet of my experiences as a young disabled person and some of the things I’ve discovered along the way. I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo). I’m a young woman, living on my own and I’ve just graduated from University. I hang out with my friends and adore animals. My disability does not make me abnormal or extraordinary. Everybody has challenges in life and my life is no different. The only difference is that many of my challenges include breaking down disability related barriers and mowing down all the obstacles in my path. But that’s a story for another day. If you’ll have me back of course!”

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual.  The articles will be published as individual blogs in our newsletter and on our website. If your child would like to write something for us please contact Emma Thomas on emmat@cerebra.org.uk.

Rhys and Anthony Take on Superhero Triathlon

Rhys, Anthony and Kevin

Rhys, Anthony and Kevin

When Rhys watched his sister take part in her first sports day, he wanted nothing more than to join in. His limited mobility meant that he couldn’t run the race himself but dad Anthony had a great idea to help Rhys get involved.

Anthony said: “I couldnt disappoint Rhys after he had such a great afternoon and was getting excited about racing so I carried him to the starting line and when it was time to go we were off. I held my arms round him, kicking his legs forward as if he was running himself.  He was absolutely hysterical with laughter all the way, people clapping and cheering him on, he was loving it! It was brilliant and both mum and I were mega chuffed that we did it.”

Rhys enjoyed the experience so much that Anthony was inspired to take on a new challenge.

“This is what has inspired me and my friend Kevin Davies to do something with him…not for him…by entering the Superhero Triathlon on the 19th of August in London. With Kevin completing a ‘Tough Mudder’ experience and me just being dad, we are going to take part in a 20k cycle, 5k run and 750metre swim. We are going to give Rhys an experience he has never had and will certainly remember. Hopefully inspiring hope and encourage more people to take part. We want to raise money for Cerebra who have supported Rhys with this opportunity and raise awareness for help and support for more SEN kids like Rhys.”

Rhys and Anthony will be using a boat designed by the Cerebra Innovation Centre. They tested it out ahead of race day in the swimming pool at the University of Wales Trinity Saint David Carmarthen campus.

Rhys and Anthony will be taking part in the Superhero Triathlon on 19th August. You can support Rhys and Anthony through their Just Giving page.

Anthony put together this lovely video of him and Rhys:

Christine Braves Wing Walk

We would like to say a massive well done and thank you to Christine Bunting who completed a wing walk to raise money for us on 4th August.

Christine is a member of our London Minds group and is no stranger to taking part in high adrenaline activities, having already completed a skydive back in 2015.

For this exciting new challenge, Christine took to the air on a 1940s Boeing Stearman biplane with the Breitling AeroSuperBatics Wing Walking team at Rendcomb Aerodrome in Gloucestershire.

Despite the rapidly growing list of activities she has ticked off her bucket list that have involved her to take to the skies, Christine actually has a fear of heights!

Christine said: “I wanted to do one last big fundraiser for Cerebra before I hit the ‘big 60’ which is rapidly approaching!

“I spent last winter wondering what I could do to top my sky dive because I wanted to do something that people would feel was really worthwhile to pay me to do.

“An idea began to brew and in a moment of, what I can only describe as complete and utter madness, I decided to sign up and perform a wing walk.

“Of course, now I’ve started telling people and raising money, I can’t quite back out and I have to go ahead with it!”

Christine has raised over £1,500 so far and you can visit her Virgin Money Giving page to help her reach her target.

Josh Nurse Becomes an Ambassador

Josh receiving his Ambassador certificate

Josh receiving his Ambassador certificate

Joshua Nurse from Pontiets, Carmarthenshire is celebrating his 16th birthday by becoming an Ambassador for us and drawing the winning tickets in our Summer raffle draw.

15 year old Joshua Nurse from Pontiets is the same age as Cerebra – and we have known and worked with him and his family since he was a baby.  Josh was born with a rare condition called Agenesis of the Corpus Callosum. It means that Josh is missing all the connective tissue that links the right and left hemispheres of his brain, which has resulted in Josh having learning disabilities and autistic tendencies.

It took a long time before it was recognised that Josh had a problem, but when Josh was finally diagnosed his parents didn’t know where to turn – until they found Cerebra.

Josh has also been a great help to the charity when we’ve needed him – he has drawn winning raffle tickets presented cheques to lottery winners and posed for photos for charity publicity. He’s attended prestigious events at 10 Downing Street and the House of Lords and was delighted when we nominated him for a Child of Courage Award at the Journal Awards ceremony a couple of years ago – and he won! Josh is such a pleasure to be with and he has touched the hearts of everyone who has met him.

Josh celebrates his sixteenth birthday in August and to mark the occasion we have asked him to become an Ambassador for Cerebra, On 31st July Josh drew the Summer Raffle and was officially welcomed as an Ambassador – as well as enjoying an early birthday celebration with charity staff!

Elaine Collins, PR & Marketing Manager for Cerebra said: “It’s been such a pleasure to have known Josh and his family all of these years and to have watched him grow up – he’s touched the hearts of everyone who has met him. He’s done so much to help raise awareness of our work and we’re delighted to make him an official Ambassador for us”.

You can find out more about Cerebra and their Ambassadors here.

Disabled Facilities Grants

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds, have published a report on Disabled Facilities Grants and home adaptations.

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of our DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The latest report from the team considers the benefits of investing in home adaptations for disabled children, including cost savings and improvements in well-being.

You can read the full report here.

How behaviour problems can affect family life

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour shares her story and explains how you can get involved in research that will help other families.

“When James was little he used to pinch me if he was cross. He couldn’t walk or talk, so his means of communication were limited. The pinching didn’t hurt too much and he developed a graduated system of pinches which even made me rather proud! If he wanted my attention and I was preoccupied, he would pinch lightly. If he was getting agitated and wanted to leave a noisy place, the pressure would increase until I got the message.

As he grew older and stronger, the squeezing inevitably inflicted more damage. I once got him stuck in a doorway in his electric wheelchair and ended up with a black bruise the size of a saucer under my arm. Despite this, I was surprised when one of his social workers confessed to me that she was afraid of him. It had not occurred to me to be frightened. He was my son and I loved him; I knew he wasn’t being malicious. If you can’t walk or talk and you get overwhelmed by crowds, or the tiniest change in routine, there are only so many ways you can say so.

The social worker’s comments made me think though and I realised that although I wasn’t scared, I was on a constant state of high alert, trying to avoid an outburst. I was also worried about James’s brother and sister and felt I had to protect them from him. It wasn’t much fun for them getting into the car with someone who might attack them, or going to the cinema with someone who might bite them if he got anxious. They started refusing to go anywhere with James and becoming quiet and withdrawn.

I wasn’t getting much sleep and the psychological strain of managing James’s moods on a minute by minute basis contributed to my emotional exhaustion. Eventually I had a nervous breakdown. As I was the main carer of James and his two siblings, this had a profound impact on the family. My husband was alarmed at the fact that I seemed to need to sleep for 20 hours out of every 24, and he had to hold the fort at home as well as work. Our marriage was under severe strain. My mother travelled miles to support us every weekend.

What I didn’t know at that time was that what was happening to my family was not unusual. There is now a much greater awareness of the potential challenges of having an autistic child. However, the resources available to help are still woefully inadequate. Now there is an opportunity to improve that. The National Institute for Health and Care Excellence ‘NICE’ has identified that behaviour that challenges is common in children with a learning disability and can have a considerable impact on them and their family members or carers.

For example it is a common reason for residential placements with associated high costs. NICE has recommended that research be carried out into preventing behaviour that challenges from developing in young children with a learning disability. This is important because NICE is an independent body set up to advise the NHS among others. Its role includes providing strong, research based evidence which has the power to persuade governments to formulate or change policy.

Now, The Cerebra Family Research Group based at CEDAR, a research centre headed by Professor Richard Hastings at The University of Warwick, is calling for 1000 families of children with a learning disability to volunteer to take part in a study over time. The study will look at the well-being of family members where a child has a learning disability, not just mothers, but fathers and siblings as well. The study will further the understanding of what it is like to raise a child with a learning disability in the UK and may ultimately lead to greater resources being available for families like ours.

Professor Hastings, who is also Chair of Family Research for the charity Cerebra, says that many studies show that mothers of children with learning disabilities and autism experience more stress from their children’s behaviour problems compared to other children. He says that fathers and siblings also report more psychological problems when a child with learning disabilities or autism has significant behaviour problems. This doesn’t surprise me at all.

If your child is between 4 and 15 years, 11 months old and has learning disabilities (including children with autism or any one of a number of genetic syndromes as well) please consider taking part. It could make a real difference.

To find out more about the study and to complete the online survey please visit the website. If you have any questions please contact the research team by email: familyresearch@warwick.ac.uk or telephone: 02476 524 139.”

©Jane Raca 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

Social Care Guides – England and Wales

social care guidesOne of the results of devolution is that in a number of areas of the law England and Wales are developing different approaches – these are sometimes very different.

The law dealing with social care is no exception and both England and Wales have seen changes in this area in the recent past. The changes in Wales in particular are significant and social services teams are still getting to grips with implementing them.

We have therefore developed two guides on social care, one for England and one for Wales which explain the different systems.

We would particularly recommend them to anyone moving between the two countries.

SEN Reforms in England and Wales

sen reformsIn England, the special educational needs (SEN) reforms introduced in September 2014 continue to be rolled out.

Although all SEN statements should be converted into Education, Health and Care (EHC) plans by April 2018 recent government figures show that 45% of the statements are still in place with only 19 out of the 152 English local authorities currently on track to meet the deadline.

Clearly, many families are still waiting for statements to be converted to an EHC plan and they can get more information about the process from our guide on Education in England: Statements of Special Educational Needs: A Guide for Parents.

However, those families undergoing assessment for an EHC plan, and those who already have one, will find the information they need in the recently revised guide Education Health and Care (EHC) Plans. (Education in England: A Guide for Parents).

Meanwhile in Wales, the Welsh Government’s proposed SEN reforms, which it hopes will pass into law at the end of the year, continue with the Additional Learning Needs and Education Tribunal (Wales) Bill being scrutinised by the Welsh Assembly.

At the same time a consultation is being carried out on how the reforms should be introduced. For now, however, nothing has changed and the current system remains in place meaning that parents can continue to request an assessment for a SEN statement. Information on the Welsh system can be found in Education in Wales: A Guide for Parents.